Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Welcome to the group, Latisha! Sorry that it took so long for you to get a diagnosis. Good thing you're moving since you've got a loser for a rheumatologist. First, he should have started you on Remicade plus methotrexate (or a reasonable substitute) rather than Remicade alone. Secondly, a large percentage of people who try Remicade have a mediocre or no response. For him to suggest that it works for everyone is ridiculous. We have a couple of members in the St. Louis area. I'm hoping that they will have a name or two for you. You didn't say when you'll be in Missouri, but make your appointment now! I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] remicade/St. Louis? > Hi I am new to this group. I have learned ALOT already thanks to everyone. I am 31 years old diagnosed with RA 5 months ago after 4 years of wondering whats wrong with me to be told I was perfectly healthy. My rhuemy put me on Remicade. I have never tried anything else. The first 3 treatments did nothing for me. My last treatment seemed to help for about 4 weeks and the other 4 weeks till my next treatment have been hard. I have my next treatment tomorrow.Is anyone else taking remicade and how long did it take to really start working. Does it seems to BAM start working or is it gradual? My rhuemy said that it in IMPOSSIBLE for it to not be working great and threatened to take me off of it because I was wasting an expensive drug. Well Im moving out of state (CA) to St. Louis MO and look forward to finding a new doc who has more compassion. Does anyone have a great Dr in that area. Thank you in advance for you help. Latisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2004 Report Share Posted July 27, 2004 Hi Latisha No offense, but your rheumy sounds like a jerk. Wasting the Remicade on you!!??????? Jeeez! Some people don't respond to one biologic but do respond to another. I have been on Remicade for I think about 2 years or so....it has made a huge difference for me, although I think that is starting to lessen here lately. It kinda did help almost immediately at first, although I think the first 2 initial doses it didn't last. I've been getting it every 8 weeks up till now. Now it seems it is only lasting about 4 weeks. Are you on anything else with it? Does your doc dose it by weight, or by a flat dose? The new recommendations are if it isn't working as well to increase frequency rather than dose. That's according to the reps who give inservices to hospital nurses. I'm waiting to see what my doc says, because, YES, GINA! I finally am going back in on Aug 5th. I am, I guess, moderately non-compliant as a patient. :>( Can't help myself! I never could listen to authority figures! Good luck with your move. I'm pretty sure we have people on this list in St. Louis. I hope you find a doc who isn't so rude! Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Cary, thanks for the reply. No I am not taking anything else with the remicade. I think the doc goes by weight all I know is I am on the maximun dose of 3 viles? I move in 2 weeks and need a doc in the st. louis area so hopefully someone will share a good doc with me. Yes my current doc is a real creep to say the least. He also told me it was impossible to be in as much pain as I claim and he only deals with inflammed joint not physcological disoders. Well lets just say I almost died when he said that. My Husband is a nurse and almost greaked out. He told me NEVER to go back but knowing that i was moving soon and not wanting to give up on hte remicade so soon i just have kept going to him my insurance doesnt cover any other docs here I am excited to find a new doctor though and am very hopeful for the future. Thanks Latisha Birdijo@... wrote:Hi Latisha No offense, but your rheumy sounds like a jerk. Wasting the Remicade on you!!??????? Jeeez! Some people don't respond to one biologic but do respond to another. I have been on Remicade for I think about 2 years or so....it has made a huge difference for me, although I think that is starting to lessen here lately. It kinda did help almost immediately at first, although I think the first 2 initial doses it didn't last. I've been getting it every 8 weeks up till now. Now it seems it is only lasting about 4 weeks. Are you on anything else with it? Does your doc dose it by weight, or by a flat dose? The new recommendations are if it isn't working as well to increase frequency rather than dose. That's according to the reps who give inservices to hospital nurses. I'm waiting to see what my doc says, because, YES, GINA! I finally am going back in on Aug 5th. I am, I guess, moderately non-compliant as a patient. :>( Can't help myself! I never could listen to authority figures! Good luck with your move. I'm pretty sure we have people on this list in St. Louis. I hope you find a doc who isn't so rude! Cary Quote Link to comment Share on other sites More sharing options...
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